Monday, August 26, 2013

EPIC, not tragic

Today wasn't a marathon...and it wasn't a sprint.  It was a leisurely 3.1 miles to be exact. And very symbolic of the distance we have gone in this journey.  Today we participated in the Head for the Cure KC 5k.  What started as a few coworkers getting together to run in honor of Dow, bloomed into a massive turnout of support from, friends, family, coworkers, and a plethora of lives who have been touched by Dow.  The overwhelming turnout was comforting and humbling and we would like to say a big thank you to those who have shown our family support in so many ways.

This week also marked the halfway point for chemotherapy and radiation treatment.  Before our new life, I had no idea what these two treatments entailed.  I will now give you some insight into our past three weeks and the 3 weeks to come.  First, Dow went for a trial radiation run.  They fit his head with a  mesh mask and mapped his brain tumor location with pre/post MRI and CT scans.  They then pinpointed the exact spots that would receive the radiation.  He has now gone everyday, Monday through Friday for 30 minute doses of radiation.

One hour prior to the radiation he must take his chemotherapy.  For those of you unfamiliar with the potency of Temodar, the instructions from the oncology nurse were very specific.  Dow cannot eat two hours prior to chemo and one hour post chemo.  This medication is so strong that we are not to come into contact with the medication itself nor any of Dow's bodily fluids. The remnants of chemicals that may be secreted in saliva or sweat could cause illness in a non cancer patient.  He now lives in pants and long sleeve shirts at home with Sloane and I so that we do not have direct skin-to-skin contact with him in case of sweating.   He does all of his own laundry seperately so that I am not put at risk of handling any chemical residue that may be on them. The human touch is a very powerful thing and we have always been an affectionate couple.  Not being able to give me a kiss goodnight and not being able to pick our daughter up if he's been sweating has been extremely difficult.

As far as side effects go, Dow has had hardly any.  He has strictly adhered to medical instructions, diet, and supplements.  Whether his phenomenal tolerance is due to this or his shear determination, we will probably never know.  Whatever it is, it's working.  He still has good energy, a great appetite, and continues to remain physically and mentally active.  His first round of labs came back completely perfect and his weight has not budged a single pound in either direction.  As of this week the only real side effect has been that the hair where radiation takes place has finally fallen out.  So he has taken this opportunity to shave his head and do a little less in the primping department.

Being at the midway point of treatment brings relief and angst.  Knowing how well this leg of the race is going makes it much easier to handle. Though, with the end of standard of care treatment comes the foreboding feeling of finding out if, and how well it worked; and where we go from here.  Plans have always been to continue on with the DCVAX trial, but the fear of hearing the words that all of this effort has had no impact on remaining cancer cells is paralyzing and  would be like receiving diagnoses all over again.  There is no real way of telling how well treatment is working, just monitoring symptoms  and occasional MRIs. Given how well everything has gone up to this point, I can't imagine this being anything but EPIC, not tragic.

Friday, August 2, 2013

Wisdom Comes Through Experience, Not Age

Sitting on the pier at Fisherman's Wharf eating a delicate, fresh caught piece of fish is where I should be.  Sightseeing, and searching for the perfect piece of artwork for our soon-to-be beautiful baby boy, is what I should be doing this weekend.  August 3rd will mark my thirtieth year on the planet, and a quick getaway to San Francisco is the way we planned to celebrate. While I should be spending this week leading up to a milestone birthday contemplating the departure of my twenties, I am preparing to embark on a journey of chemotherapy, radiation, and clinical trials instead.  As I sit here and watch my best friend endure the modern, amped version of blood-letting (he is undergoing apheresis with the hopes of creating a tumor vaccine from his own monoclonal antibodies)  I have a whole new perspective on the wisdom that comes through experience rather than age. 

Thirty should bring the sting of a carefree time gone by, and the relief of moving forward to a more rewarding stage of life.  Self introspection, confidence, and priorities should be coming into focus.  Luckily for me, finding Dow at such a young age gave me these shifts much earlier than anticipated. I am well aware that I have done more living before the age of thirty, than most get to do in a lifetime.  Finding a partner who has loved me from the moment we met, truly and unconditionally has given me the courage to do, see, and feel the things most people do not have the tools to practice until much later in life.  Together we have put a descent dent in our respective "bucket lists," conquered fears, and found new hobbies.  From diving with great whites, African safaris, and tropical getaways to post night shift breakfast dates, friendly get-togethers, and everything in-between we have run the gamut of experiences. Good ones, bad ones, some that make for great stories, and some that should never be repeated. Just when I thought there wasn't anything we hadn't done together, a brain tumor shows up to give us the ultimate lesson in life experience. 

When most thirty year-olds fear the appearance of wrinkles, a slowing metabolism, finding someone to settle down with, job security, etc.  My superficial fears have been replaced by the reality of possibly being a single mother to two very young children, an immuno-comprimised spouse, and the paralyzing thoughts of spending the rest of my years alone.  When I should be basking in the glow of my second pregnancy,  I am more tortured by the fear the internal stress I feel is leaving an imprint on our innocent, unborn baby.  I feel a sense of overwhelming guilt that November will bring not only pure joy, but more responsibilities only to compound the newfound ones.  

I am finished lamenting the hand we have been dealt, and I am now in a position to embrace our new life and cling to it with passion.  Today is much more appreciated, and every moment is tucked into my memory. Our getaway has been only postponed, not cancelled.  Due to the circumstances, my wonderful husband, even in his semi-fragile state has made arrangements for dinner at our favorite local restaurant with a special menu just for us to accommodate the new dietary guidelines he must follow.  We have always shared a love of fine dining. So while this gesture may seem self-serving, it's the perfect gift for us to add to arsenal of wisdom inducing experiences.

 I wrote this original entry on Wednesday.  Today we got word from Washington University that Dow's tumor tested positive for a particular receptor, which qualifies him for even more treatment options later on down the road.  Only 30% of GBM patients test positive for this receptor!  This is great news, and the best birthday present I could have received this weekend.